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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Tapering off of methysergide maleate?
        
(Message started by: Shari on Feb 22^nd, 2007, 2:08pm)

Title: Tapering off of methysergide maleate?
Post by Shari on Feb 22^nd, 2007, 2:08pm

My husband is currently taking 4mg of methysergide maleate a day.(2mg morn. & even.)
He uses 02 as an abortive. He has episodic CH and is at the end of his 4th week, this will be the 5th day without a CH. We went thru this 3 years ago and do not recall how to taper off of this med. Our neuro retired and the current GP prescribed this med. because we asked for it. We feel the people on this board are more familiar with this medication than he is. If any of you have taken this med. and know how to taper off of it, your input would be appreciated.
TIA
Shari and Gil

Title: Re: Tapering off of methysergide maleate?
Post by tanner on Feb 22^nd, 2007, 2:46pm

Shari, It has been many years since I was on Sansert and it didn't work for me then, but I do remember that my docs had me do a gradual 3/4 week reduction in dosage.

Not sure if you can get 1 mg tabs or if you can use a pill cutter on what you have, but I would talk to your Doc about cutting the dose by no more then 1/2 a mg. every several days to get down slowly.

Best of Luck.......Tim

Title: Re: Tapering off of methysergide maleate?
Post by Bob P on Feb 22^nd, 2007, 3:04pm

I'm not a doctor but I don't see why you would have to taper off sansert. Rx List says:
"Do not suddenly stop taking it without your doctor's approval as severe headaches can occur.

MISSED DOSE:
If you miss a dose, skip the missed dose and resume your usual dosing schedule. Do not "double-up" the dose to catch up."

So it's ok to skip a dose. If it were me, I'd cut back to one doae a day for a couple of days and then quit completely. But that's only what I would would do for me.

Title: Re: Tapering off of methysergide maleate?
Post by BB on Feb 22^nd, 2007, 3:06pm

In Australia its called Deseril. It didnt do a thing for Daniel and he tapered it off in 2 weeks, we have the 1 mg tablet here so the tapering wasnt too hard. He was taking 6 mg a day then, he went down to 4 mg then 2 mg then 1 mg daily then stopped.

Best of luck and painfree wishes to you.

Annette

Title: Re: Tapering off of methysergide maleate?
Post by Brewcrew on Feb 22^nd, 2007, 8:29pm

I'm on it right now, but I'm quickly approaching 6 months of being on it, so I'm going to take at least a one-month holiday.

I get mine from a compounding pharmacy, and it comes in 2mg capsules. Last time I was on the pills (when they were still available in the US) my neuro had me on 6 mg per day. He had me drop one pill per day every 4 days. This stuff isn't like prednisone - you won't have any serious health risks, even if you just stop. You will run the risk of kidney fibrosis if you take it for more than 6 months, though.

When I go off it (hopefully next week), I plan to drop one capsule per day every three or four days.

Title: Re: Tapering off of methysergide maleate?
Post by Shari on Feb 22^nd, 2007, 9:03pm

Thanks to all,
Tanner, they no longer have this med in pill form, now it is in a capsule because it is compounded. Backing off of it gradually for about 3 weeks ought to work.
He could take just one capsule a day for a week, then one every other day for a week, then one every two days. Hopefully the end of this ordeal in sight.

Thanks again, Tanner, Bob P. and BB for your help.
and Brewcrew (just read your message)

Painfree wishes for all of you.

Shari and Gil

Title: Re: Tapering off of methysergide maleate?
Post by Judge_Smails on Mar 2^nd, 2007, 1:09pm

I was on Sansert in the mid-late 90's and it worked fairly well for me (limited my hits to 1 per day or 1 per 2 days or so).

I tried to get it during my last cycle and was told that it was no longer available in the US? This was 2 years ago, is it back in the US? I've got a cycle coming up soon and would like to look into getting a perscription.

Oh, I was taking 3x 2mg pills daily and was never told I needed to taper.

Thanks

Title: Re: Tapering off of methysergide maleate?
Post by Gator on Mar 2^nd, 2007, 8:47pm

The brand name prescription drug, Sansert, is not back, but you can have a compounding pharmacy make Methysergide Maleate - the generic equivalent. The pharmacies that sell ready made drugs won't be able to do it for you. Call around to the pharmacies in your area and find one that will actually compound meds for you. Since your doctor has to prescribe it, s/he may already know of one or two.

My insurance company had a pharmacy by mail service and they had their own compounding pharmacy that made them for me.

My doc, who is usually very good about giving me instructions on tapering up and down, said nothing about either. Just said take one 2mg capsule 3 times a day.

I have heard people say that when they started out at the full 6mg, it really screwed them up. They recommended I start with one, then add one every 2 or 3 days until it worked or until I was taking the full 6 mg. YMMV

Edited to add: To quit taking it, i just reversed the above instructions.

Title: Re: Tapering off of methysergide maleate?
Post by Brewcrew on Mar 2^nd, 2007, 9:00pm

on 03/02/07 at 20:47:00, Gator wrote:

My insurance company had a pharmacy by mail service and they had their own compounding pharmacy that made them for me.

Cigna Tel-Drug?

Quote:

I have heard people say that when they started out at the full 6mg, it really screwed them up. They recommended I start with one, then add one every 2 or 3 days until it worked or until I was taking the full 6 mg. YMMV

Yeah, every time I've started taking it again, I jumped right in with both feet. Bad move. It's got every aspect of a bad trip (shakes, vomiting, diarreah, visual auras) for about a day and a half. Then it's fine.

Title: Re: Tapering off of methysergide maleate?
Post by Racer1_NC on Mar 2^nd, 2007, 10:10pm

When I was on it, my doc told me to taper up.....and off. I upped the dosage a little too soon and couldn't walk one morning......

Bill

Title: Re: Tapering off of methysergide maleate?
Post by Shari on Mar 3^rd, 2007, 11:45pm

My husband never took more than 4mg. a day and he was lucky it worked for him. When he got his attack almost 3 years ago we panicked when we discovered Sancert was no longer available. We did get the address of a pharmacy in Texas that does compound the methysergide maleate and our doctor faxed them the prescription and it was mailed to us. This is the same pharmacy we just used this year. We have BC/BS and they covered the prescrip. Gil has not had a CH now for 2 wks. He took l capsule (2mg.) a day this last week and will take 1 every other day next wk. I have the name and address of this pharmacy, but did not know if it is permissible to put it on the message board. That’s how we got the name of the pharmacy and I felt like the lady that gave us the information was an angel in disguise.
Shari and Gil
P.S. will share this info if it is okay.

Title: Re: Tapering off of methysergide maleate?
Post by Brewcrew on Mar 4^th, 2007, 11:29am

on 03/03/07 at 23:45:45, Shari wrote:

We did get the address of a pharmacy in Texas that does compound the methysergide maleate and our doctor faxed them the prescription and it was mailed to us....I have the name and address of this pharmacy, but did not know if it is permissible to put it on the message board.

P.S. will share this info if it is okay.

You may simply want to offer to PM the info to anyone who is interested.

Title: Re: Tapering off of methysergide maleate?
Post by Shari on Mar 4^th, 2007, 2:18pm

Brewcrew wrote:
"You may simply want to offer to PM the info to anyone who is interested."

I would be glad to do that.

Shari

Title: Re: Tapering off of methysergide maleate?
Post by Brewcrew on Mar 6^th, 2007, 7:17am

Well, I talked to my neuro, and BobP has it right - one can stop the methysergide without a taper, the only risk being that the headaches may recur any time a med is stopped.

Title: Re: Tapering off of methysergide maleate?
Post by Shari on Mar 6^th, 2007, 12:56pm

Gil started his tapering off last week. He took one capsule a day all week. (dose was 2 a day) He made it through the week fine. Then he skipped Sat. and was going to take 1 every other day. Not a good idea he felt crappy Sunday after taking the pill. So he has quit taking them entirely. So far so good. No CH going on 3 weeks now.
Again we want to thank all of you for your help.
Painfree wishes for all.
Shari and Gil

Title: Re: Tapering off of methysergide maleate?
Post by Brewcrew on Mar 6^th, 2007, 2:20pm

Bully for Gil, and bully for you for supporting him! Many pain-free wishes ahead for both of you.

Title: Re: Tapering off of methysergide maleate?
Post by Shari on Mar 7^th, 2007, 10:11pm

Brewcrew,
Couldn't get you off of my mind. Have you stopped taking the methysergide maleate? If so how is it going?
If this is none of my business feel free to tell me so, I'm not thin skinned.
Shari

Title: Re: Tapering off of methysergide maleate?
Post by Brewcrew on Mar 7^th, 2007, 10:20pm

Not impolite at all. I was just talking about it with my bride tonight. I'm going to stop tomorrow. I'll come back to this thread to post my progress. Doc says if I remain headache-free I can stay off.

Thanks for thinking of me.

Title: Re: Tapering off of methysergide maleate?
Post by Shari on Mar 7^th, 2007, 10:46pm

"BRIDE"
"CONGRATULATIONS!!"

Best Wishes to you both.

Shari and Gil

Title: Re: Tapering off of methysergide maleate?
Post by Brewcrew on Mar 7^th, 2007, 10:53pm

on 03/07/07 at 22:46:05, Shari wrote:

"BRIDE"
"CONGRATULATIONS!!"

Best Wishes to you both.

Shari and Gil

Thanks - I think. It'll be 25 years for us this fall.

Title: Re: Tapering off of methysergide maleate?
Post by bea1 on Apr 19^th, 2007, 9:49pm

Sansert is one of the only things that worked for me. (since 93) When it was no longer available in US, I got mine from Canada without the benifit of insurance of course.

I was on 12 mg and I believe my taper off was one pill (2mg) every two days. Tried lower doses but 12 worked. Took a break every 6 mos at which point I used daily DHE injections. Had CAT Scans with die then.

Then the crud started growing in my chest. (Fibroid growth). Now they won't or at least dont want me to use sansert anymore. I have been using daily DHE for about 4 months. Usually one CH per evening is about it. O2 kills fast. The Pulmonary DR doesn't like the DHE either. Also use verap and lith and melotonin. DHE helps. I not sure any of the rest does. I think I am ready to try something more radical. Not sure what though.

I know it is late to post this, but I wanted to say something about sansert.

Title: Re: Tapering off of methysergide maleate?
Post by Brewcrew on Apr 19^th, 2007, 10:40pm

on 03/07/07 at 22:20:30, Brewcrew wrote:

Well, I will be off the methysergide for one month this Saturday, and I'm happy to report that all I've had is the stray shadow here and there. I'm still on 900 mg of lithium a day, and I just down a Red Bull if I start shadowing.

I'll just stay off the stuff until I need it again. Hopefully never.

Title: Re: Tapering off of methysergide maleate?
Post by pattik on Apr 19^th, 2007, 11:19pm

on 04/19/07 at 22:40:29, Brewcrew wrote:

Well, I will be off the methysergide for one month this Saturday, and I'm happy to report that all I've had is the stray shadow here and there.

;;D ;;D ;;D

Title: Re: Tapering off of methysergide maleate?
Post by UN solved on Apr 20^th, 2007, 12:47am

Many years ago, I took Sansert 2mg X 3 per day. It didn't help me then but I didn't take it for long. That was pre-Imitrex days when the attacks were long and brutal. I don't remember tapering down at all ... but then again ... I was taking LOTS of pills trying to help ease the pain. :-/

UNsolved